'It feels like my brain is trying to be the class clown' - the reality of Tourette's

Tourette's campaigner John Davidson, the inspiration behind the film I Swear, has made headlines around the world because of tics related to Tourette's syndrome. But what is the everyday reality of living with the often unpredictable condition?

For 22-year-old Seren Jaye, her tics dictate whether she leaves the house or not.

She experiences motor twitches, such as jaw jerks, vocal tics and coprolalia - involuntarily using obscene or offensive language - which she says can be "embarrassing" when she's in public.

Silence or needing to be quiet is "really, really difficult", she says.

"I can't go into a library.

"Even if I'm having a day when my vocal tics aren't even that bad, going into a library will make them 10 times worse."

Tourette's syndrome has been in the news after Davidson ticked a racist slur while black actors Michael B Jordan and Delroy Lindo - both stars of the award-winning black horror film Sinners - were on stage at the Baftas last Sunday.

The BBC has since apologised and launched a "fast-tracked investigation" into what happened. BBC News understands the producers editing the ceremony for its delayed BBC broadcast were doing so from a TV truck and simply did not hear the slur.

Speaking in Parliament on Thursday, Culture Secretary Lisa Nandy described the broadcast of the slur as "completely unacceptable and harmful", saying the BBC "must ensure that this never happens again".

"We all want to make sure that the Baftas and all of our award ceremonies can be inclusive places where people with Tourette's, who've been shut out of society for too long, can be fully included," she said.

Tourette's is a neurological condition affecting about one in 100 people in the UK, according to Tourette's Action. The NHS says the main symptom is ticking, which involves repetitive sounds or movements you cannot choose or control.

Roughly 10% to 30% of people who have the condition also produce socially unacceptable words as tics, such as swearing, known as coprolalia.

Jaye says she felt "heartbroken" when she heard about the Bafta situation, and feels more due care and attention should have been given to the editing because "John Davidson and the people who were on stage were put in a really horrible situation".

Davidson is reported to have left the awards ceremony shortly after he ticked, and later said the BBC should have "worked harder to prevent anything that I said" being broadcast.

Seren says it has been "gutting" because the incident has "taken the light away from the amazing film".

"Anybody who's passing judgement on the situation needs to watch it first," she says.

Speaking to the BBC Access All podcast the day after the film premiered in September, Davidson talked about seeing it in a cinema being a monumental occasion.

"I cried because everyone else in the cinema that had Tourette's felt able to tic and felt they weren't annoying anyone, and that nobody was going to complain about it because everyone was there to watch a film about a guy with Tourette syndrome," he said. "That for me was just an amazing moment."

He said he hadn't previously felt comfortable enough to go and watch a film in public since 1982, when ET came out and he was 10 years old.

Davidson described the emergence of a tic as a "gut-wrenching feeling in the middle of your stomach which slowly rises to your chest".

"And then suddenly, boom, the tic will appear," he said. "It could be anything from a swear word to telling somebody they're beautiful. I don't know what it's going to be."

Jaye says her tics have changed over time. She lost her sight aged 17, five years ago, and says her more observational tics, such as focusing on peoples' physical appearances, have since lessened.

"I used to struggle with going past police cars," she says.

"In college, I was stopped because I ticked, 'I have drugs in my bag!' when I passed a police car. I wasn't even holding a bag. The police officers were very amused by it."

Smith describes it as being like "intrusive thoughts" with "no malice, no hatred and it's uncontrollable", often in moments of high emotion such as when he is sad or happy. He also struggles if he is meant to be quiet for a long time.

DJ Versatile - who is black and has Tourette's - told the BBC: "The very core of the condition is a break in the brain's cycle to efficiently send signals to the rest of the body."

"Tourette's is not something that is as easy as telling your body not to do something because it does [it] without your permission anyway."

DJ Versatile said she wanted the black community to understand that the remarks "do not represent as intent or belief and that they are factors of an involuntary disability".

"I'm saying that from being a black woman with Tourette's who has experienced racism with intent, and lives with Tourette's syndrome knowing the complexities of the disability," she said.

"You have a right to be offended but also there needs to be a level of understanding deeper than the surface level of Tourette's as an involuntary disability."

Jaye, a TikTokker who recently started working for Girl Guiding, says she sometimes tries to suppress or "mask" her tics for fear of coming across as unprofessional.

"Obviously, if you're saying really funny things, but trying to have a serious conversation, that can be quite a difficult juxtaposition," she says.

"It almost feels like my brain is trying to be the class clown."

She says her current word tic is "chicken", which she says over and over again.

But tics are only part of the condition. Smith, who's also the global ambassador for the Tourette Association of America, describes it as an "iceberg" condition. Tics are often the visible part, while those living with it also often experience insomnia, depression, anxiety or neurodivergent conditions such as ADHD and OCD.

"One of my most frequent tics is I clench my stomach and that makes me inhale air, which means that I'm constantly bloated," Smith says. "I'm constantly in pain."

Davidson also spoke about this, explaining to Access All the condition takes a physical toll on a person as they age.

"We often have secondary disabilities that come along because of the effects of the Tourette's. I get muscle strains all the time, I've got sore joints all the time with repeated tics. I get headaches an awful lot.

"And the anxiety sometimes can be so crippling that I don't even want to leave the house."

Jaye says her tics tend to be accompanied by a "horrible feeling" that builds up in her back. She finds deep pressure, like weighted blankets, helps alleviate the sensation. Being around animals helps her too, she says.

"I had a rabbit and if I was playing with her my tics would really calm down," she says. "Some people get that with babies as well. Your brain just sort of switches into a different mode and it overrides the tics."

When she is out and about and ticking, Seren says she personally finds people laughing along with her helps "ease the tension" if what she's doing is funny, like shouting "chicken".

But if it's a simple tic, like whistling, then she says ignoring it is "the best thing" for her.